The following user says "thanks"

I was in the locker room after swimming today and a gal was talking loudly on the phone, reverberating all over the place. That wakes up stiff Person Syndrome muscle stiffening. I was really getting overwhelmed. Luckily she left.

I was in the locker room after swimming today and a gal was talking loudly on the phone, reverberating all over the place. That wakes up stiff Person Syndrome muscle stiffening. I was really getting overwhelmed. Luckily she left.

I know this feeling so well. Last year I was stuck working with this woman who was extremely loud and it sent my nervous system into tension hell. My brain felt literally fried. I was like "Please stop shouting!" She refused and said I was overly stressed. I was like "My only stress is you!" Only solution for me was a quiet space after. You're welcome!

The only way I can explain it to friends who are talking loudly is that my brain amplified sound so that their loud talking creates muscle spasms. Can hardly blame friends for thinking it’s psychosomatic!

The only way I can explain it to friends who are talking loudly is that my brain amplified sound so that their loud talking creates muscle spasms. Can hardly blame friends for thinking it’s psychosomatic!

Very true ha! You can say "My brain no longer processes sensory information the same way. I am hyper sensitive to audio. Please lower the volume". That worked for my relative with very sensitive hearing. Keep in mind people will forget you have sensitivity to sound so you must be patient and remind them.

The following 2 users say "thanks"

I get frantic in public. I can’t stand long, and sometimes it’s awkward finding a place to lean or sit. That anxious feeling is over the top. I worry I will bark at someone.

Inconveniences that used to be annoying are overwhelming with SPS, and I sometimes I get frantic or I just cry. Each moment is so carefully plotted out in terms of wait time, number of steps, time driving, noise factor, med dosing times, hour of the day....that if something goes awry, the whole house of cards for that day tumbles down.

I am trying to get used to my new personality. I never realized how much of the personality is tied to physical strengths and wellbeing.

I get frantic in public. I canít stand long, and sometimes itís awkward finding a place to lean or sit. That anxious feeling is over the top. I worry I will bark at someone.

Inconveniences that used to be annoying are overwhelming with SPS, and I sometimes I get frantic or I just cry. Each moment is so carefully plotted out in terms of wait time, number of steps, time driving, noise factor, med dosing times, hour of the day....that if something goes awry, the whole house of cards for that day tumbles down.

I am trying to get used to my new personality. I never realized how much of the personality is tied to physical strengths and wellbeing.

Hmm I knew 2 people with spasticity who also had anxiety disorder and panic attacks. Not sure how common it is for the 2 to occur together but I think GABA may have something to do with both. I don't have anxiety but like you if my carefully laid out plan of how many steps, how long navigating takes etc gets thrown off often enough I am known to lash out. I can't stand people who randomly schedule things and expect it to be easy for me to do all of it. Unfortunately I used to take some of this frustration out on people uninvolved with the situation who did not deserve my harshness. I always felt terrible about it. I try to be more patient now.

Is the need to sit from fatigue or panic? You may consider using a chair or scooter.

A friend of ours, who has RA, MS-like symptoms, is recovering from a severe concussion, and now has heart issues, does Qigong exercises. She sent us two Qigong DVDs, one for stress and one for RA. Jim and I need to actually watch the videos and DO the exercises, which we haven't yet.

I found this website, where Qigong for MS and other health issues are discussed:

With regard to noise, I wondered whether ear plugs would help you ~ not to close out sound entirely, but to muffle noise a little.

Sending you healing energy ~

Love & Light,

Rose

Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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